Managed to speak to Aydan's consultant today, I discussed the random twitching he's been doing lately that reminds me of drinking too much caffeine and he has asked me to put his medicine up to 2.5mls twice a day as a start.
He said that it could be because Aydan has put on weight and he isn't getting quite enough medicine for his body weight now, so he suggested putting it up by 0.5mls to see how he goes on.
I mentioned the fact that Aydan has also had constant loose stools lately and that he's exploding out of his nappy, at least twice a day, and did he think it was connected with the medicine? He said that it could be, but for now I've got to do the whole pot and wooden stick thing and take it to the doctors for sampling to rule out anything sinister!
Oh joy!! Lol
So I have started him on the higher dose of medicine tonight and I hope we get some results quickly.
In the mean time I'm cutting down on his wheat intake to see whether that improves his exploda nappy situation! Just something I'm trying myself, not something I've been asked to try!
Wednesday, 13 June 2012
Sunday, 10 June 2012
10th June 2012
One of my friends has just pointed me in the direction of this diet!
It looks very interesting and certainly needs considering and discussing with his consultant :0)
http://en.m.wikipedia.org/wiki/Ketogenic_diet
It looks very interesting and certainly needs considering and discussing with his consultant :0)
http://en.m.wikipedia.org/wiki/Ketogenic_diet
Saturday, 2 June 2012
29th May 2012
Aydan had his first seizure/spasms in a long while tonight. He was flat out asleep and woke up screaming!
He looked so terrified the poor little man, but he hasn't had one for a while so its likely he's forgotten what they feel like!
He screamed intermittently for about 5 minutes, stopping when he was having a spasm, then screaming again, until they calmed down enough for them to still upset him, but not as much!
The seizure lasted for approximately 11 minutes, but soon went back to sleep!
I presume he had that one because he had gotten too hot and sweaty, he also needs his medicine dose upping because he has put on weight since they started giving it him.
He looked so terrified the poor little man, but he hasn't had one for a while so its likely he's forgotten what they feel like!
He screamed intermittently for about 5 minutes, stopping when he was having a spasm, then screaming again, until they calmed down enough for them to still upset him, but not as much!
The seizure lasted for approximately 11 minutes, but soon went back to sleep!
I presume he had that one because he had gotten too hot and sweaty, he also needs his medicine dose upping because he has put on weight since they started giving it him.
28th May 2012
Aydan ended up going into hospital for a bit today because the chemist failed to get him his medicine in, after a weeks notice, so he had to have some out of their emergency supply cupboard! I wasn't happy at all with the chemist, to say the least!
Whilst I was there I mentioned Aydan's jittering that he's been doing lately, which reminds me a bit of drinking too much caffeine! These episode sometimes last for 5 minutes, when he is awake or asleep. He also gets random flinching from his head and limbs throughout the day. The consultant said it sounds like he needs his medicine dose upping, and that he's possibly having a different type of seizure, and might need more medicine, but Aydan's consultant is away on holiday for 2 weeks so they won't do anything until he gets back!
I also mentioned the fact that he still wakes up 5/6 times throughout the night, but they haven't commented on that.
Whilst I was there I mentioned Aydan's jittering that he's been doing lately, which reminds me a bit of drinking too much caffeine! These episode sometimes last for 5 minutes, when he is awake or asleep. He also gets random flinching from his head and limbs throughout the day. The consultant said it sounds like he needs his medicine dose upping, and that he's possibly having a different type of seizure, and might need more medicine, but Aydan's consultant is away on holiday for 2 weeks so they won't do anything until he gets back!
I also mentioned the fact that he still wakes up 5/6 times throughout the night, but they haven't commented on that.
Saturday, 19 May 2012
19th May 2012
It's been a lovely quiet few months here!
He's had a load more teeth come through, and I was worried that they would trigger off more seizures as i have been told that teething can do, but other than spacing out a bit every now and again he's not had any of the spasms! (although will mention the spacing out when I next see his consultant in July!)
We've also just had the letter come through which gives us open access to the children's ward, and lists the name of the emergency rescue medicine he needs to have if he has seizures/spasms which last longer than 30 minutes! (Buccal Midazolam)
Aydan also needs to go to the ward if he has a few seizures (clusters of spasms) very close together for a review of his medicine.
Let's hope he never has to have the rescue medicine!
He's had a load more teeth come through, and I was worried that they would trigger off more seizures as i have been told that teething can do, but other than spacing out a bit every now and again he's not had any of the spasms! (although will mention the spacing out when I next see his consultant in July!)
We've also just had the letter come through which gives us open access to the children's ward, and lists the name of the emergency rescue medicine he needs to have if he has seizures/spasms which last longer than 30 minutes! (Buccal Midazolam)
Aydan also needs to go to the ward if he has a few seizures (clusters of spasms) very close together for a review of his medicine.
Let's hope he never has to have the rescue medicine!
Tuesday, 1 May 2012
1st May 2012
Aydan's 1st Birthday
Today we all celebrated Aydan's 1st birthday!
He had a wonderful birthday filled with lots of visits from family and friends, lots of cake, presents and cards! :0)
I love my little man so much, and it makes my day waking up to his beautiful smiling face every morning
Today we all celebrated Aydan's 1st birthday!
He had a wonderful birthday filled with lots of visits from family and friends, lots of cake, presents and cards! :0)
I love my little man so much, and it makes my day waking up to his beautiful smiling face every morning
Saturday, 28 April 2012
28th April 2012
Just been discussing Aydan's sleeping problems with a few lovely ladies on a forum I go on, as he wakes roughly every hour and a half through the night, drinks about 8ozs of milk, then goes back to sleep again! This is making a very tired mommy!
One of the ladies suggested that it might be apart of his epilepsy/TSC, and it had never occurred to me before, but I think she might be right!!
I did a bit of research and it seems that 90% of TSC patients have some kind if sleep disorder, something to do with them not going through the complete sleep cycle and the epilepsy waking them up.
It doesn't really say a lot about what they can do for them, some doctors will occasionally allow them to have sleeping tablets so that the parents can get some rest! But to be honest this horrifies me slightly! I don't want to give my baby drugs just so I can get a bit more sleep! Plus the sleeping pattern doesn't seem to affect him much as he's never really grumpy!!!
Will just have to accept the fact that I have a baby that doesn't sleep much, and try and work it with daddy so we can take shifts, and catch up on sleep that way.
Poor little man! But I expect that more things will start coming out of the woodwork as he gets older, and thankfully this doesn't seem to be an issue for Aydan, just a tired mommy! Lol
Seeing that beautiful smile every morning makes all the sleepless nights worth while :0)
One of the ladies suggested that it might be apart of his epilepsy/TSC, and it had never occurred to me before, but I think she might be right!!
I did a bit of research and it seems that 90% of TSC patients have some kind if sleep disorder, something to do with them not going through the complete sleep cycle and the epilepsy waking them up.
It doesn't really say a lot about what they can do for them, some doctors will occasionally allow them to have sleeping tablets so that the parents can get some rest! But to be honest this horrifies me slightly! I don't want to give my baby drugs just so I can get a bit more sleep! Plus the sleeping pattern doesn't seem to affect him much as he's never really grumpy!!!
Will just have to accept the fact that I have a baby that doesn't sleep much, and try and work it with daddy so we can take shifts, and catch up on sleep that way.
Poor little man! But I expect that more things will start coming out of the woodwork as he gets older, and thankfully this doesn't seem to be an issue for Aydan, just a tired mommy! Lol
Seeing that beautiful smile every morning makes all the sleepless nights worth while :0)
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